This my first year I am participating in Courage Classic, and I am super excited to support patients like Carter Seely and their families.
Courage Classic is absolutely fantastic event, and this year am very proud to support and ride in the name of young Mr. Carter Seely and his excpetional family. Carter's story is trully remarkable and while being only 3 and half years old he went through more than most of in a life-time. Perhapts its enough to say that Carter was born with one of the most complicated congenital heart diseases known as hypoplastic left heart syndrome. However, I belive that the most personal and accurate description of what Carter went through would be from Carter's mom and dad:
From Trenton and Shanalyn:
Carter is a 3 year old born with Hypoplastic Left Heart, or what we call half a heart. The entire left side of Carter's heart never did form. We didn't know Carter's diagnosis until after he was born. It was discovered by the hospital 24 hours after birth. At that point Carter took a flight for life jet over to Children's Hospital in Aurora, Co where we spent 5 months in and out of the hospital while Carter underwent two open heart surgeries called the Norwood surgery and Glenn (2 out of a 3 part series). After Carter's first surgery he got a left diaphragm paralysis and left vocal chord paralysis as a result of the surgery. Carter needed to receive a g tube (gastrostomy tube) to feed him because the paralysis in his vocal chord caused him to aspirate into his lungs. Eventually he overcame his paralysis with his right vocal chord adapting to cover what his left couldn't do, and at 10 months old he was able to get his g tube taken out. Carter returned to Children's July of 2017 after suffering a large stroke through the left side of his brain. Unfortunately, due to Carter's physiology, he is at a high risk for clots. After a week in the hospital, Carter recovered rapidly and was released. To this day there are little to no signs of Carter's stroke. On August 28, 2018, Carter had his third open heart surgery and the last in the series called the Fontan. The surgery went well although recovery took some time. This recovery was more difficult for Carter, walking was a big challenge for him at first, but eventually Carter over came all the obstacles and he was released from the hospital on his birthday, September 18. The outcome of Carter's heart looked good all things considered and we were now in the period where we should be able to breathe a little. Carter was doing so well that at his post op appointment in November, we were told we wouldn't have to be seen back in cardiology for another 6 months to a year, what great news! But in April, Carter started to become very irritable, tired, low energy, and he would sleep all day. The next thing we noticed was that his face appeared to be puffy and swollen. I called his teams, but none seemed too concerned yet. Then over the weekend we took Carter to docs on call and they were also concerned and tried to set Carter up to get an echo the next day. However the next day when we went to his pediatrics office they said they had to schedule an echo and it could take a week to do so. That was not good enough, Carter's father and I knew there was something very wrong with Carter. That day Carter had gained a pound over night (we believed to be from water retention) and he wouldn't even walk, or get up off the ground. We called Children's hospital and asked that they please let us drive Carter over to them because he was not doing well. Children's was able to let one of Carter's old nurse practitioners know what was going on, and she after hearing what was going on had it set up for Carter to be flown on a hospital plane from Grand Junction to the Children's hospital. That was April 15, 2019. It was found that Carter had severe decreased function in his right ventricle, in other words he was in major heart failure. Doctors did many tests and labs to determine the reason behind Carter's heart failure and unfortunately Carter remains a mystery. Carter's heart function has not returned, but with a constantly ran IV medication called milrinone Carter has been made stable. Doctors did try an oral medication therapy for Carter in attempts to get Carter stable off the IV med, however Carter began to regress back on the oral medications and therefore had to be put back on the milrinone. So it has been decided that Carter's only option is for transplant. We are currently waiting for approval from insurance and once that comes, Carter will be listed for heart transplant. Carter has remained his beautiful bright self through all of his challenges. We are blessed to have such a strong boy and such a brilliant team that works to find the right answers for him.
Trenton and Shanalyn
As you can see Carter's life story resmables roller-coaster ride, heroics, and constant will to fight! Carter will not be the last child to face a life-threatening illness, and his family will not be the last to navigate a frightening diagnosis.
The Courage Classic is not only a personal challenge, but also an opportunity to support positive outcomes and healthier futures for children.
Thank you everyone for supporting Carter and his family!